Postcards from "The Road"

Hi Everyone,

Happy New Year. Obviously we are aiming for health and vitality this year.

The support you are showing for Jen is wonderful. I have had a much better insight into this while she, Will and the girls have been staying with us. Her phone is constantly beeping with messages from you all, and even if she doesn't respond - trust me she is listening - it is helping her find the energy to fight the good fight.

I think I speak for Jen and all the immediate support crew when I say we have moved from the 'alarmed' stage to the 'alert' stage. Time is an amazing healer, and as Jen moves onto phase 2 of the chemo treatment - she has settled into the chemo routine  - and can almost see the light at the end of the tunnel.

Jen started her second cocktail of chemicals 3 weeks ago. This cycle will last 12 weeks. She has Taxol  weekly - with general tiredness and headaches as a side effect, then she has Carbo Platinum every 3 weeks - which brings with it nausea. Despite all her efforts  to keep a normal routine, for one week out of three the nausea is delibitating.

So during the good weeks (about half the time) Jen is in good health - eating well, spurts of energy, mental focus. She needs to have a morning and afternoon nap, but otherwise soldiers on.

I always admired Jen for her positive attitude and can do approach to life, but now I watch in awe as she and Will tackle finishing off their renovation, caring for two demanding little ones, and managing Jen's health. It is amazing how life goes on, and everyone gets on with things.

Jen and Will are very excited to be moving back to Lilyfield this weekend. The house is looking amazing. The huge effort of Maryanne, Bob the Builder, Will the labourer/painter and Jen the interior designer have payed of beautifully.

Special thanks to the chemo fairies - the crew who have been taking Jen to hospital each Tuesday. Depending on the week, this can be a few hours or half a day. It's when you get the reality check of what Jen is really dealing with, but also get the confidence boost, that all will be well in the end.

Many of you have asked 'what's next' and 'when we will know if the chemo is having the desired effect'? After this round of chemo (end March) Jenwill have radio therapy daily for 6 weeks The first real test will be her scan in September. It's tough not to be able to get an earlier read on things, however I think this is the thing with cancer and those who have had it - you get your annual scan and over time, you think and worry about it less and less - that's called recovery!

So Angels, thanks once again for all your love and prayers. At this stage everything is going well.

Love

Cathy

A MESSAGE FROM JEN

Hello everyone

Just wanted to say a quick hi. I’ve been meaning to do this for a while but haven’t found the energy… but now, as the new year takes off, I’ve passed one milestone of my chemo – and have come out the other side (yay!) - and before I head in for more treatment (boo!), it seems like the right time.

There is so much I want to say – most importantly I want to really thank everyone for the emails, texts, phone messages, facebook messages, blog messages*, gifts, cards, food, music, thoughts and prayers. Please know that I am receiving everything that is sent to me - even though I might not respond. I am so grateful to everyone for keeping in touch. It means a lot to me as I am necessarily cutoff from many of the people I’m used to seeing so much of. And to those who have been in touch from afar and also from the past – it is very special to be hearing from you all.

I am so grateful to my sister Cathy for keeping everyone up to date with my progress through her emails and the blog. She really has taken away the need for me to be sending updates, which is a huge load off. Everything I’d want to be saying she seems to capture so aptly. Sitting at the computer, emailing and texting is hard for me when I’m unwell. I really can’t speak on the phone which means communication at these times is limited. But when I come out from the haze and see messages from everyone it’s lovely. So please continue to keep in touch!

I had my last treatment for the year on 20 Dec and finally came up for air around 30 December – so Christmas and New Years were pretty quiet for us but I personally enjoyed it through Heidi’s eyes. She was very excited about Santa for the first time – we left out some food for him and the reindeers - and of course opening presents on Christmas morning was very exciting. 

Getting through the last treatment and side effects was significant as it was the last round of the AC, which is this concoction that has knocked me about a lot. It seems to affect everyone differently but for me I’m out of action for around 10 days. Cath has described what goes on for me – needless to say, it is so great to have finished this drug. The doc gave me an extra week off before I start up treatment again (tomorrow already…) which has been so nice.  

The next round of drugs (Taxol with carbo platin) will be weekly for 12 weeks but the doctor seems to think the side effects won’t be as tough. He cautioned by saying that “it’s still chemo” – but I’m really hoping I might handle the next round better. While I’m talking about the doctor, Professor Michael Friedlander, he is a wonderful doctor in whom I have a lot of faith. As Cath has mentioned, he is the breast cancer specialist at the Prince of Wales Hospital in Randwick who also looked after my mum nearly 20 years ago (and she as everyone knows is amazing and completely recovered of her illness which seems like a distant memory for all of us, even her). He is also a renowned expert in terms of his knowledge of the BRCA1 genetic mutation, which is what I now know that I have. This is a gene which has been passed down through the family and which has basically made me more susceptible to getting cancer than the average woman. At some time in the future, after I get through the chemo, I’ll write more about what this means but at the moment the doc says the most important thing is to treat the current problem, which is the cancer found in my left breast. Prof Friedlander is throwing everything at it - as he says - first chance is the best chance we have to get rid of it completely. And I have great faith in him and what he is doing. (I have to correct something from an earlier update and that is that we are using a “new” drug. The carboplatin is not a new drug and has been used on ovarian cancer (and likely other cancers) for some time. But the use in BRCA1 breast cancer is not something widely trialed and large sample data is not available. That notwithstanding, he advises the success in small samples in particular for BRCA1 has been very good – hence Prof Friedlander choosing to use this on me.)

The girls – Heidi (3 in Feb) and Amber (15 months) are mostly as happy as Larry. Amber is of course too young to understand anything, but Heidi knows that mum’s been a bit sick. Her indication of my wellness is whether or not I can carry her. When I came out of hospital after the lumpectomy I couldn’t carry either of them, which was a bit distressing especially for Heidi. She kept asking when I would be better so that I could carry her “big much” as opposed to just a little bit. Anyway, I can carry her big much now although of course at nearly 3 she walks most of the time…she just likes to know I can carry her if she needs me too! She also asks if my booby is better yet, so in small ways she knows a few things aren’t quite right. The girls find it hard to understand why they have to leave me to rest at times. It’s hard for me too hearing them outside the door sometimes banging and crying to come in. But at these times I feel so off it is less painful to hear them than to get up and be with them. I know this will pass, and I tell myself that I’m doing this for them, in addition to Will and of course for me.  And that it is ok.

We have had wonderful help from friends and family, in particular during the period after I came out of hospital, and then when I started my treatment and before we had formal home help. Will and I are really grateful to those who were able to be around for us then and who continue to be on call.  More recently, we’ve been eligible to get assistance in the way of a nanny (Chelsea) in the home due to the young age of the girls and my illness. This is working out well and the girls have warmed to Chelsea, which is the most important thing. We are hoping she will be able to stay with us for the duration of my treatment. But thanks also to friends who continue to make themselves available for us during the times when Chelsea is not around. We are very grateful.

Our house in Lilyfield- so near but yet so far. Having moved out in 2^nd week in August we’d aimed to back in by Christmas. It was always a bit ambitious, but amazingly we had very little rain when we needed the skies to be clear (someone looking down on us?) and we had a lot of good tradesmen and not too many mistakes along the way, so things tracked pretty well. We are really nearly there and were it not for the Christmas break we’d just have needed a few more weeks, but with the slowdown over Christmas (and our own slowdown..) it’s going to take a little while longer. But it’s looking great and we can’t wait to get back there. We currently estimate around Australia Day for the move home. My mum as project manager has been doing the most amazing job managing the tradies. She has been there onsite from 7am every morning cracking the whip. She has a wonderful eye for the detail and god help the tradies if they put a foot out of place. They can’t say no to her – good luck to anyone finding a 70-year old woman with as much energy to do what she is doing for us. And with such enthusiasm! We are really grateful to mum and things just would have fallen apart without her given our issues over the past few months. And thanks to dad who does endless running around for mum including bringing lunch to the building site every day. Dad also does more babysitting that any grandfather I know!

I must also say a big thank you to everyone who helped us with the move from the unit to Cath and Rob’s place  - couldn’t have done it without you guys. And of course thanks to Cath and Rob for having us stay at the moment. We're having fun!

There are so many people to thank for so many things. I can’t name everyone but please know that Will, the girls and I are really really grateful for everything. It is very humbling to be the recipient of the help and we look forward to being able to reciprocate as opportunities arise.

I do have to say special thanks to Monique who has taken so much time out of her life to be with us. She has stayed with us every Wednesday night since I came out of hospital – to, in particular, give Will a break overnight. She has also stayed with us during all of Will’s work trips and there have been a few. When she is with us, it is like there is an angel in the house. Things are left clean, washing done and of course, most importantly, we have two very happy little girls who love their Aunty Mon as much as anything. And their mummy is happy too.

As for Will, let’s just say he is keeping things “real”. He’s not wrapping me up in cotton wool, he’s not painting a rosy picture of the situation – as things have obviously been tough for all of us and he carries more than his share of the burden. But everyone who knows Will will know that that is him. 

Amid starting his new job he has had to step up his father duties and keep things moving at the house (he & Toby moved one tonne of pebbles last weekend! Thanks Toby!). At the same time he is providing great support to me, endlessly trying to pull me out of the chemo haze and back to good health so I can be with the family as much as possible. And words can’t describe what a wonderful dad he is - with the girls he is just the best. When he comes home at night, the look of excitement on their faces is priceless. There is no doubt our girls know they have a fantastic dad and I would not like to be going through this without him by my side.  

Dear friends and family, I’ll end this message now by sending you all the absolute BEST wishes for the new year. May 2012 hold many special things for everyone, in particular an abundance of happiness, good fun and most importantly excellent health.

I look forward to seeing everyone soon.

Much love to all

Jen xxxxxx

* re the blog, sorry this has been hard for many to use, I understand you need to log in to either gmail or yahoo/create a login if a first time user BEFORE you to try to leave a message…this might help? But feel free resort to other modes of communication if this is all too hard